A day in the life: autism

Autism changes the way people communicate and experience the world. 1 in 100 people are autistic and many more are undiagnosed. Our new charity partner is Autistica, who believe that together we can help people with autism and their families have long, happy, healthy lives.

Every person with autism will have different symptoms and experiences, and it can be difficult to understand what people with autism experience every day.

To raise awareness of autism, and to raise vital funds to support Autistica, I challenged myself to spend 30 days exploring 5 of the sensory issues that 9 in 10 autistic people face:

Touch

Sight

Taste

Sound

Smell

Although this blog will not cover any behavioural issues which people with autism may encounter, I hope this exercise will get people talking about a topic that many know little about. Read on to find out what I discovered.

Week 1 – Touch

People with autism may be extra sensitive to touch or may crave certain sensory feelings. It can mean that they find certain textures uncomfortable – so they may not wear certain clothes or eat certain things.

Those who crave touch may feel calmed by certain textures, some for example like to sleep with a weighted blanket. In order to recreate an inability to feel, I used plasters on my fingertips, and wore gloves to restrict the sense.

As I was wearing gloves, many people initially thought it was because I was cold. However, when in a situation where the environment was warm, or if I had to pay and remove coins from my purse, it got people asking more about the reason behind the gloves.

This was great as it gave me the opportunity to explain more about the challenge, and raise awareness of some of the sensory issues associated with autism.

One person even asked me if I had Raynaud’s syndrome which affects blood circulation!

It is said that stroking a dog can trigger the release of a bonding hormone called oxytocin. I was very surprised that when I stroked my dog during this part of the challenge, it felt very different to me, as it did not give me the same satisfaction as it normally would. That actually made me quite sad and upset.

Also, when washing my hair, it was awful not to be able to feel if you have all the shampoo out, so you are never 100% sure if your hair is fully clean.

Finally, I found that because I couldn’t feel properly, I was gripping things tighter, and pressing buttons harder in order to “feel” something. This sometimes led to cramp.

Week 2 – Sight

People with autism see the world differently. They may notice patterns and detail that others can’t spot, but may not see the big picture in situations. They may also find certain colours and lights uncomfortable. I stopped wearing my prescription glasses to create a blurrier view and difficulty seeing at distance.

This one was harder for people to notice immediately. However, they were curious when I purposely sat closer to my computer and had to take more regular screen breaks. A few people remarked “I’d be lost without my glasses” and “I don’t know how you cope”.

I found that certain tasks were more challenging than others, such as manipulating data in large, complex spreadsheets.

Things you take for granted each day like reading menus when changing TV channels, using laptops became more difficult as they cause headaches, or sometimes you just can’t see the detail.

I also found that bright lights were more intense which probably didn’t help with the headaches.

Week 3 – Taste

The sensory feeling of food can sometimes really affect what and how people with autism eat. They may dislike certain smells and textures and prefer to separate food, or eat a limited variety of foods.

The majority of my tasks were based on hyposensitivity. However, with food, I thought it would be a bigger challenge to try to replicate hypersensitivity instead. On that basis, I decided to eat food that, to me, was too spicy or strong tasting such as madras curry.

I also added lots of chilli powder and spices to any homemade dishes. I even added paprika to baked beans!

Many people were more concerned about the effect it would have on my digestive system, rather than understanding the effects it would have on my relationship with food.

I was surprised that I was sub-consciously skipping meals, because I didn’t have the same attitude towards food that I had before – normally I have meals planned in my head in advance and look forward to them.

Week 4 – Sound

People with autism may be sensitive to sounds, especially when they are unexpected. Many people with autism like to wear headphones in certain environments so that they can focus and block out any distracting or unpleasant noise.

In order to reduce my ability to hear, I used a combination of cotton balls, sleeping ear plugs and water ear plugs depending on where I was.

Initially, people were patient and willing to be supportive, however as time went on, people appeared to get a little tired of repeating themselves, or talking loudly to accommodate me.

I was surprised at how different my own voice sounded when I tried talking or singing. Also other activities such as eating, brushing my teeth sounded different and actually quite loud inside my head.

I did feel I was either shouting a lot, or speaking too quietly for fear of shouting. This led to me feeling quite isolated from conversations and situations to avoid alienating others.

Week 5 – Smell

Strong smells can sometimes be unpleasant for people with autism. A strong perfume or food, for example, can really add to a person’s sensory overload.

Initially I started by wearing a carbon nose mask but it deteriorated quickly so I used a combination of a neck scarf and a face mask to continue to create the loss of smell.

Well, as you can imagine, initially people thought I had broken my nose! However, afterwards they were surprised and said it appeared difficult, especially going out in public with those on.

It surprised me how much losing my sense of smell affected my taste. It’s similar to having a cold, when you can’t taste something – it makes it more difficult to enjoy food.

Again I found myself skipping the odd meal.

Week 6 – All senses

Generally a lot of people were shocked that I gave it 5 days replicating it all together. Many were very inquisitive but showed a lot of sympathy, rather than look at any possibilities it may create.

When I put everything together, I did experience issues being involved in social situations.

I also found it harder to learn when I attended my Spanish class and my concentration levels were much lower.

I did get tired a lot faster too.

Imagining life as a person with autism

Living in a world where things are “different” on a daily basis can be difficult for people to appreciate.

I think the hardest for me was the hearing. When I found it difficult to be a part of conversation, I felt isolated and found it difficult to connect with people as I had to repeat or make allowances for me.

It has been really interesting to understand how sometimes the smallest change can make the biggest difference. For example, allowing colleagues to take breaks, making sure there is a range of food at the canteen and ultimately being more patient and understanding could help people with autism in the workplace.

I now appreciate the importance of inclusion and believe that understanding will be the key to create a positive environment for everyone. This is true whether it is to support people who are neuro-diverse, neuro-typical, have a visible disability or non-visible disability.

To help create a more inclusive atmosphere for people with autism in the workplace, I wanted to finish this blog with a few practical communication tips from Autistica:

Don’t be offended – “We might react honestly or may avoid shaking your hand, but we’re not being rude.”

Don’t expect eye contact – “It can be really hard for some of us. I can listen to you much more easily if I look away.”

Do be patient and understanding – “We may take longer to process the meaning of your words, give us a little time if we need it.”

Do treat people with autism with respect –“If we are quiet or behave differently, don’t speak down to us, treat us as equals.”

Don’t be sad that I’m autistic –“It’s just the way I process the world, it can give me challenges, but it gives me great joy too. I wouldn’t be me without it!”

PICTURES

Some of the items I used:

“Taping” up my fingertips before wearing gloves:

Hot curry spices:

My carbon nose mask:

Out at an Arenacross event whilst still doing the “ALL” senses part of the challenge:

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